Archive for the ‘hc's problem list’ Category

e-Patients and doctors both, wise up. If you haven’t already.

June 11, 2010 · Filed Under Why PM, hc's problem list, pt/doc co-care, research issues, understanding statistics · 26 Comments

I’ve only been studying healthcare for two years – far less than most people on this blog – and I hesitate to be overly assertive. But I have, finally, reached the point where I feel confident in citing cases where people are simply being unscientific: ignoring evidence. That’s always hazardous, and it becomes insidious when it’s caused by a blind, unquestioning belief in our institutions.

Case in point:

Julie Thoren is an active practitioner of Participatory Medicine who’s seen first-hand the tremendous value informed e-patients share with each other. This morning she wrote to me about a post, How online patient communities make money from patient data, on the blog of KevinMD, a neighbor of mine in Nashua NH.

Kevin pointed out, correctly, that patients need to have their eyes open about what might be done with their data, etc. Commenter “Doc D” cited the chestnut “The plural of anecdote is not data,” and Julie responded about Participatory Medicine and the value she’s found in online communities.

Here’s my comment (with a few edits), reflecting on the realities I’ve personally seen and what others have written in JoPM (the Journal of Participatory Medicine): Read more

Great news from “Mama Lion” Engelman and daughter

June 7, 2010 · Filed Under Why PM, e-patient stories, hc's problem list, positive patterns, reforming hc · 4 Comments

Three weeks ago you met mother and daughter Diane Engelman, and learned of their odyssey through the land of smoke and mirrors as Diane fought to get Hilary the correct surgery. Hilary had been told to hurry up and have babies early because she supposedly needed a mitral valve replacement, vs the much less troublesome (but more difficult) repair.

The health plan’s surgeons don’t have much experience or success with the repairs, so doing the right thing would require costly – but necessary – out-of-network surgery. They fought for years, researching and documenting, and won.

Yesterday Diane sent this update: Read more

Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey

May 18, 2010 · Filed Under Why PM, e-patient stories, hc's problem list, positive patterns, reforming hc · 69 Comments

Through the magic of Google Alerts, Diane Engelman recently learned of this blog. She’s one heck of an e-patient, though until now she’d never heard the word.

That proves patient empowerment is a real trend, driven by a powerful force: the desire to help oneself – or, often, one’s child – in any way possible, using every possible resource, which today includes the internet and social connections. (Yes, real medical value from connecting with non-MDs.)

In this case a large health plan was out-thought, outresearched and outmaneuvered by one of the most potent e-patient subtypes: the “Mama Lion.” The plan’s own cardiologists unanimously said Diane’s daughter Hilary needed mitral valve surgery, but the staff surgeons repeatedly said no – largely because, one suspects, they didn’t have adequate expertise for the appropriate surgery and didn’t want to pay to have it done out of network.

Instead they urged Hilary to hurry up and have babies while she could, wait excessively long for necessary surgery, and accept their claim that they were adequately qualified to do it when they clearly were not.

This is a long, true, inspiring story of an empowered patient/family using the internet to drastically alter the outcome for the better. She’s had this story written for a year and has been looking for a place to publish it. So glad you found us, Diane – and mazel tov, Hilary!

Patient-centered care: coordination and putting the compliance shoe on the clinician’s foot

May 10, 2010 · Filed Under Why PM, hc's problem list, policy issues, pt/doc co-care, pts as teachers, reforming hc, trends & principles · 4 Comments

The new definition of participatory medicine at the Society’s website notes that patients “shift from being mere passengers to responsible drivers of their health, and … providers encourage and value them as full partners.” As with any collaboration, this must include a hefty dose of listening by both parties.

I’ve just returned from an extraordinary week in Minnesota, with visits to several thought-provoking care facilities. The week was all about improvement: I spoke at the Institute for Clinical Systems Improvement and IHI Colloquium, I visited the brand new Frauenshuh Cancer Center where a friend works (wow), and on Saturday toured the Mayo Clinic. I returned with a headful of what’s possible.

Then I found a post on Paul Levy’s blog at my hospital, “Patients will teach us how to be compassionate.” He relates a problem of a chemo patient, a “difficult stick” for the needle people, who asked for the special IV team, who can handle difficult cases. She was told no, and got hurt. Paul asked the team to come up with a better approach. The team will now flag such patients in the system, and he asked them to convene some patients for a further discussion. Please see that post for the full story – it’s shorter than what I wrote in reply:

The HealthCare Pyramid – Views from the Apex and the Base

April 15, 2010 · Filed Under Why PM, e-patient stories, hc's problem list, reforming hc · 10 Comments

We’ve talked in the past about “d-patients” – doctors who become e-patients themselves. Our own founder Tom Ferguson MD was one. “D-patients” are a special case that proves, once and for all, that being an e-patient has nothing to do with rejecting the medical establishment, as some have feared. Being a d-patient, or any e-patient, is about being empowered, engaged, and participatory.

This special guest post is by Alan Pitt MD, a radiologist at a neurological hospital who found himself being a participatory caregiver: his mother, an accomplished artist, became a quadriplegic. At left is a drawing she later did, showing what her breathing felt like when she first came off the ventilator, with her chest walls very weak. This drawing has been accepted into several national exhibits.

The medical story is compelling, but as with all patients, when all is said and done, life goes on. In this thoughtful essay Dr. Pitt asks why we can’t have better e-tools to make it easier for the family to participate in her care.
Read more

What to do about “the cream of the crap”? ONC’s Adoption/Certification Workgroup meeting

February 18, 2010 · Filed Under hc's problem list, medical records, policy issues · 26 Comments

I’d like your help preparing thoughts and testimony for a policy meeting I’ve been invited to attend in Washington next week.

For these meetings, one needs to submit prepared remarks in advance, for the committee to digest in advance. And from what I’ve learned so far about this, there’s a lot to chew on, and people of all stripes (that’s you) can probably provide valuable input. At very least you can express yourself.

[Update 1 pm ET Thursday: I haven't been able to convert the recording mentioned below (which is in RealPlayer format) to display it here, but if you have RealPlayer installed you can play it yourself at http://real.welch.jhu.edu/ramgen/DHSI/Dec182009.rm. The slides are often out of sync with the audio but they catch up. Skip the first 9 minutes; the talk starts around 9:15 and goes 30 minutes, followed by 30 minutes of Q&A. The meat of it is in Dr. Koppel's talk, but the Q&A has more juice.]

What part of “Give us our damn data” do you not understand?

December 15, 2009 · Filed Under hc's problem list, medical records, policy issues, pt/doc co-care · 52 Comments

Yesterday I attended “How Access to Information Can Empower Patients and their Caregivers,” conducted by the Consumer Partnership for eHealth. CPeH is an alliance of stakeholder groups sponsored by the National Partnership for Women and Families. It has no web site of its own – it’s just a Partnership for Consumer eHealth (duh), convening to work on accomplishing good health through IT – especially health data.

An incredible moment (and I don’t say that often) happened after three physicians presented how their organizations are giving patients access to their medical records online. Their presentations were all encouraging. But during Q&A we got down to the nitty details, and comments from two physicians revealed a well-meaning attitude that I can only describe as protective and paternal:

Concern about emotional impact of bad news
Concern about the difficulty of interpreting some reports: “Even I can’t understand radiology reports sometimes.”

Regina Holliday was there – the “73 Cents” artist whose husband died of kidney cancer in June. Ted Eytan MD, an avid advocate of patient empowerment, asked her thoughts. With a cold clear look in her eye she said: Read more

Woman Loses Health Insurance Due to Facebook

November 21, 2009 · Filed Under general, hc's problem list, policy issues, reforming hc · 25 Comments

Imagine a world you live in where every insurance offering is accompanied by a creepy set of Big Brother-like ongoing investigations into your life. Everything will be used as evidence against you. Yes, even your Facebook profile.

That world is here. Well, not right here, but up north in Canada.

Yes, a Canadian insurance company decided to keep tabs on a woman it was paying sick leave benefits to, and lo and behold, that woman was having — wait for it — fun!

Nathalie Blanchard, a 29-year-old IBM employee from Quebec, took a long-term sick leave from her job after being diagnosed with major depression. Her doctor told her to try & have fun, and to take a sunny vacation to get away from her problems. She did just that while she received monthly sick-leave benefits from Manulife.

And she posted her vacation photos on her private Facebook profile. But recently, the monthly payments stopped.

Why? Because Manulife, her insurance company, found the photos and made the medical diagnosis — from a photo, mind you — that she no longer suffered from major depression. From a photo.

MITSS: Much-needed support after medical errors

November 15, 2009 · Filed Under Why PM, ethics, hc's problem list, positive patterns, pt/doc co-care, reforming hc · 9 Comments

Ten years ago this week, 11/18/99, Linda Kenney was scheduled for ankle replacement surgery. She woke up three days later in the ICU. Her chest had been cut open. She was in the hospital ten days.

And nobody talked about what had happened.

What had happened is that the nerve block administered to her ankle (a local anesthetic) had accidentally entered her blood. It quickly hit her heart, which was promptly anesthetized and stopped pumping.
Read more

A quote I won’t soon forget

October 15, 2009 · Filed Under Why PM, hc's problem list, key people, news & gossip, understanding statistics · 26 Comments

Marcia Angell MD is a well-known, respected physician, long-time editor of NEJM. So it was a bit of a shock today when Amy Romano, blogger for Lamaze International, sent me this quote:

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.

From Drug Companies & Doctors: A Story of Corruption in The New York Review of Books, around New Year’s.

Dana Blankenhorn of the ZDNet health blog called it “a bombshell.” I couldn’t agree more. And I must say, with all the smart people in this community, why on earth haven’t we heard more about this??

And how on earth are we supposed to be empowered participatory patients if we can’t trust the world’s leading journal?

For one thing, we can have our eyes wide open about the evidence we’re supposed to trust. Get educated. Learn how to read health news reporting – including the journals. Wise up.

Think critically. It’s a fundamental part of being an empowered patient.

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